Friday, July 13, 2012

This week, we travelled to Detroit to meet with Dr. C, who is arguably the leading expert on the treatment of infantile spasms. This is the same neurologist that we visited in April of 2011 for a second opinion prior to Will's first brain surgery. We checked into the hospital on Wednesday morning (7/11) and Will was admitted for a 24 video EEG recording, followed by a PET scan the next day. After this was completed, we had our meeting with Dr. C.

We went to Detroit hoping to hear that there was still hope for our son to get better than he is today. While we are happy with where he is compared to a year ago, we still have fears and concerns. After his surgery, we watched him recover and begin to soar developmentally, and then starting in February we watched those gains gradually fade away.

Will enjoying vacation in Florida

By all accounts, Will is doing very well, especially when when compared to how things could have been if he would not have had his surgery in November. He is amazingly happy, giggly and well, let's face it...downright adorable. He runs, he jumps, and he loves to play. He is learning, very tiny bits at a time. However, if we compare Will to other children his age, he is still severely delayed. Even though he will be 3 years old next week, he consistently tests at a 16-18 month level, scoring in the bottom 0.1% for his age. The thought of potty training is not in the realm of possibility for the near future. Will cannot talk and understands very little while of what we say. He is enrolled at a preschool for children with special needs - regular school is not an option. In short, there are a lot of fears that we have about his future.

Will's developmental delays are often hard for us to explain. His physical abilities are right on track, he is extremely social, and he is tiny for his age. Oh, and did we mention how cute he is? To the casual observer, most would never guess that he is so severely delayed, and we don't really like to point it out. But it is the reality of his life, and we simply aren't willing to settle for "good enough" if we have an option to do better. While we have accepted that he will not be typical, we feel it is our duty as his parents to help make him the best little Will that he can possibly be, and that is why we sought out another opinion from Dr. C.

Brothers sharing a drink

With these thoughts in mind, we listened to Dr. C tell us that he feels quite strongly that the Clinic did not remove enough brain material. Will's PET scan is still very abnormal, and his EEG shows constant spikes coming from the left parietal and occipital lobes. Dr. C recommended that Will have another brain surgery to remove what remains of the malformed material in Will's brain, which is what he believes is causing additional developmental delays. He added that the first 3 years of life are the best opportunity for development so he would like to see us do this surgery as soon as possible. He was extremely confident, and also extremely optimistic about the possibilities for Will's development if we do this surgery.

This confirmed suspicions that we have had for several months about the remaining abnormal brain activity coming from Will's left parietal and occipital lobes, right next to where his temporal lobe was removed. Regardless, we were still shocked to hear Dr. C's recommendation. As we walked out our minds were racing with emotions of anxiety, excitement, uncertainty, and fear. But both of us agreed that proceeding to surgery is undoubtedly the right thing to do.

Will is scheduled for surgery to have the remaining bad brain tissue removed on September 7th in Detroit. This is going to be a two stage surgery. First, they will place a grid of EEG leads directly on Will's brain. Then, we will wait for 3 days with the grid in place to be sure that we know exactly what brain material needs to be removed before proceeding to surgery to remove the remaining abnormal tissue. We hope and pray that this will be it, and our little Buster Beans will be able to resume the development that ground to a screeching halt when he was about 17 months old.

Introduction

Hi, my name is Will, and I am 6 years old. I am loved very much by my parents, Dan and Kelly, my big brother Jack (age 9) and my baby brother Cole (age 2). I was diagnosed with Infantile Spasms in February of 2011. My parents created this website to keep our family and friends updated about my journey with this rare and catastrophic form of pediatric epilepsy.

After numerous treatments failed to stop the seizures (Topamax, B6 Pyridoxine, ACTH, Keppra, Vigabatrin, Depakote, and the Ketogenic Diet) doctors removed the left temporal lobe of my brain in November of 2011, which stopped all visible seizures but my development still remained stagnant. I then underwent a two stage surgery to remove my left parietal and occipital lobes in September 2012. Today, I am a walking, talking miracle and my family celebrates every seizure free day that we have been blessed with.

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